I Have Madelung's Disease [also Called Dercum's Disease]

I found my first lipoma on the top of my rt. outer thigh in 1990, but I wasn’t diagnosed with Madelung’s Disease until 2009.  I have it below the waist, and am a teatotalling female.  I am of Swedish-Scottish-Irish ancestry, and no one else has this in my family. 

I had my first huge lipoma removed in 1990, and had a seroma develop post-operatively.   It took 6 months of whirlpool and another surgery to heal the wound. 

Later, during the 1990's, I developed a number of smaller lipomas on my calves and around my inner knees, and on the left side of my neck.  And, I steadily gained weight in my thighs and hips, and had edema develop in my legs below the lipomas.  I now have growing ones on my inner ankles, knee and thigh areas and under my upper arms too.

In 2004, an MRI was done, but the told me that there was no membrane on my 20# left thigh lipoma near my knee.  At the local teaching hospital I was told I had saddlebags and was fat, but they couldn’t tell me why I didn’t have 2 saddlebags.  Then they refused to treat me anyways, saying I was too risky a patient because my sarcoidosis and diabetes had caused lung and heart trouble. 

I saw a new plastic surgeon in 2009, because I had a new lipoma on my right buttock that was making it hard for me to get into my van, my left leg is hugely swollen below the big thigh lipma, and because I can no longer get out of a chair without help unless I have furniture to the sides of the chair to push up on.   I rarely go out now, for I am afraid of falling if it is raining- I can't get up without calling the Fire Dep't-  and because it is so hard to climb up the stairs getting into my place.  I must now wear men's 72" pants to get around my hips and bottom, and these are the largest size that I can find on the internet.  I weigh close to 300 pounds, though I have lost weight in my upper half of the body, but cannot lose any where the Madelung's Disease is affecting me. 

I am getting a CT with contrast to see where the arterial blood sources are located for these huge lpomas.   And, afterwards, I am hoping that we can soon start cuting off the blood supply to these lipomas, one at a time, so that they will shrink, and a few days later I can get  the liposuctions done, again one at a time.  My goal is that I will lose inches and weight, and that soon I will be able to do more and get out more once again.  

Are any of you familiar with www.mdjunction.com, health.groups.yahoo.com/groups/madelungs_disease, or the Madelung's- Dercum's Disease are at www.careplace.org?  I am in contact with several other people with this disease through these places, I hope that these other places will help anyone else with this disease.

insectlady insectlady
1 Response Feb 21, 2010

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